JR

Hi everyone! I want to develop a treatment plan so that when I can’t avoid a flare, I can minimize it. I have no idea how long I’ve had this. I remember very clearly the day my symptoms first refused to let me continue ignoring them. I was standing on the bulkhead officiating turns at the Sunday morning session of the Indiana stage age group swimming championship at our son’s last age group meet. My left arm just below my elbow HURT. I kept looking for a bug bite or a cut or a scratch. Or a burn. Nothing. was there, but it kept annoying me throughout the morning. We came home between prelims and finals to eat, rest, & take care of the dogs. I decided to take a nap instead. When my husband woke me I found a single tiny red spot on my arm where it hurt.

For finals I was part of a team who ran statistical analysis software on the swimmers’ performances. I just kept feeling more and more odd. Achy, chest heaviness, nothing I could easily describe. When the session was over, I couldn’t walk down the stairs so I had to sit and butt walk myself down. That was fun. Not! I couldn’t stand up straight, could barely walk, could hardly breathe, & my head hurt so bad I could hardly think. I stopped in the restroom on the way to gather the family so we could go home, and scared the stuffing out of myself. From the waist down I was covered in Petechiae. Not one or two. Not hundreds. Probably millions. I was covered from my ankles to my waist in tiny red spots. Hubby (bless him) took me straight to urgent care where the doc on call gave me 2 doses of nebulized albuterol to relieve the asthma and help me breathe and 2 shots of prednisolone. He sent me home with a script for a nebulizer & albuterol and a Medrol dose pack. I had a couple more flares that spring, then they went away. We thought ‘hmmm, that’s odd’ then got busy with life again and forgot about it.

In the fall my husband was diagnosed with his second primary cancer. There was a mishap during surgery and he spent nearly two months in ICU as they searched for the problem. I broke out again (apparently, cold and stress are my main triggers) pretty much the entire time he was in hospital. This time it was waist down, torso, and arms. And so it continued. We had no idea what was going on. It came and went at will. Periodically, I’d break out with petechiae or purpura (petechiae’s older, bigger, scarier sibling). Other times, out of the blue, my chest would feel tight and heavy. Other times, I’d wheeze. My feet started having random bouts of freezing/burning/tingling pain. Random muscle and joint aches, pain, and numbness came and went. Without rhyme or reason. Fatigue has been my constant companion since my twenties, but there were times when I could barely lift my head off the pillow.

The scariest part was not knowing when it would happen again. It’s nearly impossible to prepare for the unknown. It had to have a root cause; had to be knowable. The unknown is scary. Family doc had no idea what was going on. Could never get in while I was in full flare, so he never saw it and I think he thought I was making it up. Changed docs. The new doc is great, but had no idea either. At least he believes I have something going on that he can’t explain. He told me ‘idiopathic’ just meant he was an idiot for not being able to figure out what’s wrong with me. Gotta love a doctor with a sense of humor!

He sent me to a dermatologist who “knew” immediately what my problem was. No biopsies, no blood work, but he knew what I had. Even wrote it down for me so I could research it for myself. I’d see that my symptoms fit perfectly, then sent me home with 60 mgs of prednisone a day for a month with a couple refills. I researched the diagnosis he’d given me. Henoch-Schonlein Purpura didn’t really fit at all. Except for the petechiae, nothing fit. I wasn’t 5. They weren’t mostly on my bum, and I while my joints randomly ache (arthralgia) they’re not inflamed (arthritis), and I rarely get abdominal pain.

The prednisone was great for symptom relief but it also gave me the shakes really badly, and I regained the 25 pounds I’d worked so hard to lose the summer prior. When my sugars started running in the 200s, I decided it was enough of a good thing and tapered off the prednisone. I started journaling. At first, every time I had a flare I noted the date, what prescriptions I was taking, what I’d eaten, how I felt. Over time trends began to appear. From trends, researching became more focused and I finally discovered cryo. This is my current working hypothesis. It’s the only thing I’ve found that makes sense of all my odd, seemingly unrelated symptoms.

I did a couple years of the doctor ‘bounce’, bouncing from this specialist to the next. I’ve finally bounced to a rheumatologist and am hopeful I can get some traction on a correct diagnosis. I think it’s cryo, but if it’s something else so be it…as long as we can get it identified and therefore find a treatment plan that will help alleviate or minimize the symptoms. And yes, I am fully aware symptom relief is rather like putting a Band-Aid on a broken arm, but at this point I’ll take what I can get. Baby steps to victory is my new mantra. Since this keeps getting worse each year, next winter is pretty terrifying…and this winter hasn’t quite let go yet.

It’s reassuring to know that I’m not alone in this journey. Being able to connect with others who are understanding and supportive makes it easier to accept. Those who share their knowledge and stories are so inspiring. Thanks!

Quick update. Fast forward a year. I now have a working treatment plan that includes pretty good avoidance techniques, a new diet that seems to have helped tremendously, and intermittent prednisone for those times when nothing else will do. Of course, it’s still a Band-Aid on a broken arm in the sense that while I’m learning to deal with the cryo, now I’ve developed Sjogren’s and Raynaud’s. And I’m now testing positive for elevated Rheumatoid factor, but I continue to learn from those who know more about living with this than I, so I know it will be okay.